4 years ago
Anyone had Optic Neuritis that hasn't resolved?

I have had ON in one eye which hasn’t cleared up, and although I’m back at work, I’m seriously struggling with looking at the monitor all day.

My Ophthalmologist suggested that the damage to the optic nerve will be permanent. So that leaves me in “What can I do to overcome this” territory….

I saw an Occupational Health doctor yesterday who suggested speaking to “Access To Work” via the DWP. I called JobCentre Plus this morning, spoke to a disability advisor, who seemed to think that it may not be as helpful as the OH doctor made out due to there not being much money left in the pot in January, because budgets get renewed in March. This really disheartened me….

Any advice folks? I’ve tried tinted glasses and a VDU screen but still can’t work with the monitor without struggling.

Advice on dealing with Access To Work would be really helpful too.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.

@angeshiftms, what does your MS Nurse say about the issue?
Your company are legally obliged to make changes to help you continue working. Budgets aren’t your concern.
have a read through this :- http://mstrust.org.uk/downloads/ms-trust-at-work-with-ms-2012.pdf
As far as your work is concerned, how does the ON affect you? There are things that you can do with computer screens to make them easier to work with.


Anonymous

Does painful eyes and daily headaches behind the eyes count?

I’ve been on the Royal National Institute for the Blind website recently to get info for a family member. It looks as if it offers all kinds of advice and I’m wondering if they could point you in the direction of more specialist help. There are certainly loads of links on there.

I also wonder if you should get a second opthalmic opinion from a specialist neuro-opthalmologist. I know my hospital in London has a specialist neuro eye clinic. Just might be worth following all leads before you resign yourself to the situation.

@angeshiftms The first case of ON no, I’ve been left without being able to see any detail vision, the other two times with my good eye thankfully it seems to have come back fully. As for what you can do to help, as its just the one eye thats giving you trouble have you thought about an eye patch? I’m being serious here, they don’t have to be pirate themed, but the pirate look is rather nifty with a three pointed hat and stuffed parrot 😉

I also have permanent nerve damage in the left eye.

It was early Jan 2012 when I was in hospital with the neuritis.

It initially blinded me, then some sight came back slowly and I was put on steroids but it never totally healed up.

It was the neuritis that led to my ms being diagnosed, which explained a few other things that had been happening to my body.

Although the nerves is permanently damaged, technically the neuritis has gone but the damage done by has remained.

Hi @angeshiftms

I had ON in my left eye and I still have blurred vision that will never heal. It gets worse with heat and stress etc, I struggle to see the programmes that we use in my job(which was never a problem before ON)and I explained this to my company.

I was referred to Occ Health through work and they advsd my managers that larger monitor would help me to see the programmes better or a magnifying programme which can be loaded onto your pc at work. I have been given a programme called Zoom tech and this allows you to magnify your computer programmes up to 200% and you can ammend this to your needs on a daily or hourly basis you are in control.

I am not sure how big your company is but they should be able to get this equipment for you and claim some of the money back from the government, alternatively call access to work directly as I have been in touch with them quite recently and they were really helpful. You complete a questionaire over the phone and then once you have signed form and returned this to them a case worker will contact you, dont know if you spoke to them directly or the DWP.
https://www.gov.uk/access-to-work/how-to-claim

Hope this helps and good luck

Hi guys,

Thanks for your replies. It is my left eye which is affected, and following a visit to the GP this morning, I’ve been signed off work for a week, and the GP has phoned and left a message with my MS nurse for advice. Vision seems to be worse over past couple of days so whether this is a pseudo-exacerbation or otherwise, we will see.

I called Access to Work yesterday, who were v helpful, and are sending out a form, and my employers are also looking into solutions in the meantime.

@Gav Eye patch sounds like a giggle. Where can I get one from, asides from fancy dress shops? 😉 What does the patch do to help?

It’s almost like having a migraine when I look at the computer screen, with that sort of white interference you get when having a migraine, and the image I see is fuzzy. I can’t see detail with my left eye. If I close my left eye, I can see better. It’s really frustrating. The occupational health doctor commented that it is no wonder that I am struggling with computer work. He said that my brain is confused, and that if the vision in the left eye does not return to normal, that my brain will begin to ignore what is coming in from the left eye and my sight will adjust.

Oh, just had a call from GP as I write this, and she is referring me to Ophthalmologist today as a result of MS nurse advice.

@angeshiftms I figured if it was one particular eye that was giving you trouble, it would be logical to assume that covering that eye up would help. Does it get better when you have that eye covered up? I think boots do eye patches (serious ones) and I’m sure that you could get one from amazon 🙂 Maybe start wearing one when you get up?

@Gav Does make sense. Cheers buddy. I’ll ask the Ophthalmologist what else can be done when I see him/her tomorrow.

I’m feeling really delicate because of this diagnosis. I feel somewhat incapacitated because of this because it’s affecting my ability to do my job. It’s really upsetting. I’m probably (and have been since diagnosis) too hard on myself. I keep trying to just get back on with things as normal, but I’m not the same as I was before my last relapse in October, so I guess I maybe have to accept this new normal…. It’s a total head game isn’t it?!

@angeshiftms we all want things to go back to normal, its completely understandable, but I have just one question for you, what exactly is ‘normal’? Normal is different for everoyne and its a constantly changing thing for everyone, even without MS, your MS just brings those changes into sharper focus. Normal for me back when I was at school was being really fat with a complete inability to speak with girls, oh how times change 🙂

My eyes remain bad, especially in situation of extreme heat/humidity/stress. Just learned to stop, cool down then carry on as normal!

Hello,
My eyes took about 6 weeks to heal after the first time, and afterwards I ended up having to always wear glasses due to the lasting damage. So I guess by that, they never healed, they remained blurry (to a point – tho much healed from the first relapse).
Since then I have had my eyes lasered, in 2005. I figured that if I got 5yrs out of it with no specs then that would be money well spent – well its now 8yrs plus, still no probs!
So I guess yea, they didnt really heal 100%, but I ended up having surgery to correct it, and now I have 20:20 (but only due to a nice surgeon and his scapel!)
Hope it improves swiftly!
S

Ange,

Contact [email protected]
He sorted out Access to Work for me. It starts this Monday 04th.At no point did he say their was a restriction on Money! Quite the opposite. I am being driven in from Herts to Victoria everyday! Good luck with it. all the best.

First up, if you’re in the UK then definitely visit or contact the RNIB. They are amazing and you’ll be blown away by the sorts of ingenious solutions they offer for making the most of your vision.

The RNIB Helpline is 0303 123 999, email [email protected]

My presenting symptom was ON but as it was “atypical” it took 6 months to get a diagnosis even though I was being seen at a very well known eye hospital. They kept telling me my eye/retina was completely healthy and they couldn’t figure out why my vision we increasingly blurry in the right eye. Pity they didn’t check the optic nerve!

But I eventually did get my diagnosis after an MRI, followed swiftly by the CIS diagnosis and a course of IV steroids. My sight improved a little but not completely, the neuro was very honest with me and said it was possible the damage was permanent. Unfortunately he was correct and my sight has never healed completely in that eye.

I literally had 2 weeks respite before I started having problems with my left (aka good) eye. I blame the stress of the diagnosis. Cue the next round of ON that got worse and worse until the next round of steroids and my MS diagnosis. This was the hardest time as I couldn’t rely on either of my eyes, I was scared and as I was as pre-diagnosis I didn’t have much support from the NHS.

It’s been 6 months since my second relapse and I haven’t fully recovered. I think all the healing that was going to happen already has. I really sympathise with you as I too have struggled with keeping up with my job. I’m a graphic designer so I find the loss of sight particularly hard to deal with – my colour vision is damaged irrevocably and I feel I can’t trust my vision. But I’m trying to focus on the vision that DID come back and be grateful for it every day. You don’t know what you’ve got til it’s gone etc. And I find I’m much more focussed now – when I’m having a good day with my sight I am super productive knowing that every day might not be so good.

And there are lots of things that can be done to help you make the most of what you’ve got – software is increasingly designed with accessibility in mind and there are a host of visual aids available, such as magnifiers. I was so impressed when I visited RNIB! My workplace has been helpful but I really had to set the agenda and let them know what I needed to keep doing my job. You OT will be invaluable with that I’m sure. I’ve never had a OT but my nurse has mentioned I could have them check out my workplace set-up if I like – I’ll see how I go….

So it’s not all bad news – it sounds cheesy but I’ve really learnt to experience the world in different ways; smell, taste, hearing and touch are freaking awesome. I have superhero hearing now too, my senses compensating I think. I was in Rome recently and I was so excited to see the Sistine Chapel, gormlessly forgetting that my distance vision is terrible. Needless to say I didn’t see much of the chapel! But I did check out the posters in detail outside so I could see what the blurry bits looked like. And then I ate some gelato. And it was divine.

Good luck.

Post Comment

You must be logged in to reply to this topic.